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Thursday, June 25, 2015

Tulip Tales: Ava

I am super excited to share this Tulip Tale with you guys! I just love this series. I can't even tell you how much it means to me to be able to connect with families of children with special needs. While each story is heartwarming and special in its own way, this one in particular is very dear to my heart. Ava is one of the children in my care at Little Tulips. We just love having her with us every day! She is an absolute pleasure to work with, and it is incredible to see how far she has come.

Ava's Mom, Selina shares her story.

*****

Ava was born with a rare condition called Arthrogryposis Multiplex Congenita (AMC). Arthrogryposis is described as congenital (from birth) joint
contractures in two or more areas of the body. A contracture is a condition in which a joint becomes permanently fixed
in a bent or straightened position, completely or
partially restricting the movement of the affected joint.

I found out about this
condition via ultrasound when I was 18 weeks pregnant with Ava. Her Dad and I were
very nervous and were left with so many unanswered questions. We
had never heard about this condition before. The doctor explained
it to us, but of course when we went home we found ourselves searching the internet
looking for more answers. The articles we found were terrifying
and we were faced with some really difficult decisions. In the end, having Ava just
made sense to us. She was born here at the Health Sciences Center in St. John's at 39 weeks gestation. I had to have a c-section, because of the way her limbs were positioned.

There are different types of Arthrogryposis. Ava has what is
called Amyoplasia, which is characterized
by severe joint contractures and muscle weakness. This condition
affects Ava's ability to use her arms and legs. Children with Amyoplasia
are believed to have normal to above normal intelligence.

The exact causes of Arthrogryposis
are not fully understood. Any
factor that restricts fetal movement during development can result in congenital
contractures. Motion is essential for the proper development of joints. A lack
of fetal movement allows for excess connective tissue to form around the
joints, which can result in the joint becoming fixed and/or limiting
the movement of a joint. In theory, any factor that diminishes or
restricts fetal movement can cause congenital contractures. Amyoplasia, the most common form of AMC, occurs randomly and is not genetic. I was told that sometimes it "just happens" to babies during fetal development.

Ava was born with her legs bent about ten degrees the wrong
way, and she is unable to move her arms or hands due to the lack of
muscle. Fortunately, with the help of physiotherapy, occupational therapy, and orthopedic surgery, Ava has been able to
overcome some pretty big obstacles.

She has had four surgeries to date. Her first was to insert a port-a-cath that would assist her in all of her upcoming surgeries. Ava had previously gone in to have surgery on her feet but they couldn't get IV access because they couldn't find a vein. That is when it was decided that a port would best suit her medical needs.

Her second surgery was to cut the tendons in her ankles on both feet. She had to wear casts for several months, and then braces (AFOs) during the day and at night to help get her feet flat on the ground. This surgery was a success for one foot, but the other required more extensive surgery.

Her most recent procedure was this past January. She had surgery on her legs to help create a bend in her knees. She went from having almost no bend at all, to now almost a 60 degree bend. She wears braces on her legs to stretch the muscles and help keep the range of motion.

The main goal of treatment for Arthrogryposis is to help a child's joints move as normally as possible. Ava attends regular therapy sessions at the Janeway, and is followed closely by several doctors at the Shriner's Hospital in Montreal,
where they specialize in her condition. We are very grateful for all of the
medical help that we have received in both provinces. Ava continues to
amaze us every day. She is our little trooper!

Ava is a
very strong-willed little girl. She is a smart,
energetic, and playful two (almost three) year old! Ava has
figured out how to use her hands to color, paint, draw and play games on the iPad. She uses a walker
to get around, and to say she likes to walk is an understatement. Her first
words in the morning are a very animated, "Mom, I'm walking!"

Ava continues to grow and learn new
things every day and she is surrounded by family and friends who can't
wait to see what the future holds for her. We know she will succeed in
anything she puts her mind to. I am thankful for every day with my little
blessing. I would truly be lost without her. "The only disability in life is a bad attitude!" We try and
keep that quote in mind while raising our daughter. We wouldn't change anything
about Ava. She is perfect and has made us the parents we
are today. Our minds opened up to a whole new world when she was born.

*****

This year, June 30th, 2015 will be recognized as Arthrogryposis Awareness Day across the province of Newfoundland and Labrador. While we should consistently fight to raise
awareness for conditions no matter the time of year, having a designated
awareness day has the potential to make that fight more
impactful. I am so pleased to
say that this year we will be wearing blue in support of Ava and all other families who are affected by Arthrogryposis. Please join us and wear blue for AMC day!